Commentary: What my invisible disabilities have taught me about workplace inclusion

Published by Macey Shofroth on July 28, 2025July 28, 2025

By Kate Hayden

At some point in January 2020, I could tell my body was struggling.

I knew how to listen. By then, it had been 12 years since I was diagnosed with postural orthostatic tachycardia syndrome (POTS), and I was long past the carousel of medications and strict routines that had managed early years of symptoms. My case file at Mayo Clinic was shut.

But one day, I started falling asleep – at my standing desk in a buzzing newsroom, among rowdy concert crowds and in the middle of Lambeau Field, surrounded by screaming fans with championship dreams in sight. I’d wake up to nonsensical sentences in the middle of story drafts, or leave editorial meetings with no memory of what the team discussed. My doctor referred me to a specialist nearby, who scheduled me for a sleep study in April.

At work, I kept my game face on. Everything was manageable until a mystery virus leapt out of the newspapers and into Iowa, shutting down all nonessential medical treatment. In less than five months of working from home and delayed medical treatment, my writing tanked and I spent endless Zoom calls fighting sleep attacks on camera.

I had no diagnosis and no treatment plan. Worse, I had no language or tools to explain these experiences at my job, where colleagues and supervisors could only see the quality of my work drop off. It was the most vulnerable I have ever felt; I feared for my professional reputation and future.

In all of 2020, I never showed symptoms of COVID-19, even when my partner got sick that March. But the symptoms of another illness were there, even though bystanders couldn’t spot it.

We all tend to assume pain and hardship is obvious; it’s not. Disability – conditions that interfere with a person’s access to movements, senses and the activities of life – can look like Alzheimer’s disease, lupus or post-traumatic stress disorder. Many of these conditions can go undiagnosed or misdiagnosed for years, isolating one from effective treatment.

The business community needs to learn how to navigate this. Although research is just beginning, recent medical studies suggest that COVID-19 in individuals may be associated with a higher likelihood of developing dysautonomia syndromes like POTS. We don’t know yet how many Americans may be living with an undiagnosed disability after surviving COVID-19, perhaps managing splitting headaches, brain fog or other debilitating symptoms.

Many of these disorders seem to predominantly affect women. POTS is particularly common among teenagers and young women, who are already trying to navigate early career expectations with lower pay than their male counterparts. When an invisible disability is unmanaged, organizations lose out on expertise and diverse viewpoints, while the employee loses time in the workplace, career development opportunities and possibly their financial stability.

During this time, testing accommodations for my condition felt, to me, like a game that both I and my employer were losing. I didn’t know about resources like the Job Accommodation Network (askjan.org), which has a database of suggestions searchable by disability, physical limitation, job function and more.

Dysautonomia International (dysautonomiainternational.org) had helped me in the past, but it wasn’t until I finally underwent medical testing that I was given literature for resources like Wake Up Narcolepsy (wakeupnarcolepsy.org).

These resources unlocked language for my new reality, as I began considering what disability really looks like. With the right doctors managing the right treatment plan, I enjoy a full life – running my career, volunteering and even hiking mountains in South America. Without treatment, I saw how quickly my life could derail.

Healing is not linear, and careers certainly aren’t, either. One year after my new diagnosis, I finally acknowledged my life in 2019 wasn’t coming back, and I sought out a different career path than the one I had expected. Yet, I want to see a future where an invisible diagnosis does not prevent people from thriving in a career they love.

To get there, we need employers who will adapt and learn together, particularly as the ramifications of COVID-19 are better understood at a societal level. We need a business community willing to have nuanced, truly difficult discussions with curiosity and grace for each other. We need to ensure employees feel safe to disclose when they need accommodations at work – and it will take major cultural change to get our society there.

In 2024, I walked into a new office and greeted a new supervisor. Reviewing my schedule, I learned I would be joining a large conference with specific triggers for my sleep attack symptoms: dozens of new faces, with significant time sitting and listening to a speaker present on new-to-me content.

I paused over the schedule, looked at my supervisor and chose to disclose. This time, I had language and experience to help me navigate.

Kate Hayden is a writer and editor based in Des Moines. She previously covered tech and innovation for the Business Record.